Thursday, January 15, 2009

Getting back to the story

When you are given a diagnosis such as this, especially when you have lived a healthy life, it is very difficult to accept. How can one go from a rocking boot camp at 5am in the morning and eating a good diet, etc. to having a deadly diagnosis such as this as a 38 year old woman? Even Doctors that are friends of ours our friends of friends that heard about this way this is ALS, ALS is an "old man's" disease.

Well, we of course felt the same way, surely the doctors were missing something. Surely the root of this must exist in the blood transfusions that H received in her emergency surgery. So we vigorously pursued this path. The most likely culprit being Lyme disease. What we did not know is that Lyme disease is a VERY controversial disease, especially in the absence of a known tick bite in an area known to be infested with affected ticks like the North East of the USA.

This angle opened up a huge area for us to explore. After all, going from 100% perfectly healthy to an ALS diagnosis shortly after massive blood transfusions and emergency surgery is just too coincidental to accept. So, down the path we go.

We had heard of a Dr. in Colorado Springs named Dr. Martz that had been diagnosed with ALS, was wheelchair bound and later diagnosed himself with Lyme disease, treated it with a regimen of long term IV antibiotics and subsequently was 'cured'. We attempted to contact his clinic but were turned away because he had ceased practicing in the mean time. We heard the his PA was starting a clinic, but was not ready for patients. So we hit a dead end there for the time being.

As a result, we decided to find "the best Lyme literate Doctor in the country." In doing this, it is important to recognize that being a Lyme literate Dr. is not a picnic. This disease is highly controversial and there are many claims on both sides of the coin. On one far end, Lyme disease is really a bio-engineered disease that the Nazi regime refined to weaponize in WW II and was contained post-war in secret labs outside of, coincidentally, Lyme Connecticut. It is a documented fact the the US hired an ex Nazi PHD/MD to run "lab 257" on an island off of CT to develop this disease as a potential bioweapon. I won't belabor this particular theory, but if you are interested, you can read a book that is well documented called "Lab 257" that was published a few year ago. It is a scary, scary story.

On the other side, Lyme is just a bacterial infection that can easily be treated with antibiotics and forgotten about once it's over. We don't know what the truth is at this point. We hope someday, someone will know.

Being Internet aficionados ourselves, we found a wealth of information about Lyme disease, it's insidious background and it's connection to lots of diseases including ALS. More and more we were convinced that H's deteriorating condition was the result of a Lyme infection brought on by the multiple amounts of blood products that she required during her emergency surgery and subsequent problems.

Of course, none of the Neurologists that we were seeing saw any connection whatsoever (professionally) and that this diagnosis was not the result of the blood. In fact, they said that this was a ridiculous path to follow and was a waste of time. Were we from CT? Had we travelled there? Did she get a tick bite? No, No, No. BUT she did get almost her entire blood supply replaced over a 3 day period. Does that count for anything?

We had to pursue this angle, regardless of what the Neuro's said. So we did. As I mentioned we scoured the internet for someone that would hear our case. We found Dr. Stephen Phillips in CT. He was a Yale guy and had a history of helping people with "chronic lyme" infections. Our case is odd because of the blood transfusions, but he saw us anyhow.

After going there to meet with him and a huge list of symptoms and tests, he clinically diagnosed Heidi with Lyme disease and was willing to perscribe medicine to treat it. This treatment regimen essentially involved fairly high doses of antibiotics to kill off the pathogens taken orally. We started this treatment after that visit in early August of 07.

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